Survivorship,Quality of Life,and Transition to Adult Care for Pediatric and Adolescent Thyroid Cancer Survivors

Abstract

The importance of long-term survivorship care to reduce survivor and family anxiety and burden, decrease emergency visits and health care costs, improve knowledge, as well as implement timely surveillance is widely accepted. Most childhood cancer survivors suffer from an increased number of medical and psychosocial comorbidities as they age and are at a higher risk for early mortality, which differs by cancer diagnosis. Childhood thyroid cancer survivors fall within this spectrum. Some have significant complications and/or late effects from treatment, whereas others have no long-term medical late effects, but almost all will require life-long thyroid hormone replacement therapy. Therefore, providing survivorship and transitional care, including a survivorship and/or transitional care plan (SCP/TCP), as well as periodically assessing the needs and quality of life for the patient and their family, should be implemented for our young thyroid cancer survivors.

Key points

Survivorship and transitional care can increase knowledge, empower patients and families, decrease anxiety, and improve overall outcomes for childhood thyroid cancer survivors.

Survivorship and transitional care has an equal or greater focus on practical and supportive care needs as to medical surveillance.

Pediatric and adolescent thyroid cancer survivors will presumably face similar financial, physical, and psychological long-term effects as adult survivors over time.

A survivorship or transitional visit should include a quality of life and needs assessment, education, and lead to any necessary ancillary referrals.

Delivery of survivorship or transitional care plan should be carried out as part of a formal clinical visit.

A care plan should include a detailed treatment summary as well as specific information about the survivor's long-term risks and care requirements based on current guidelines, which can evolve and adjust as health and personal needs change.

An initial survivorship visit should take place within 6–24 months of the completion of the initial treatment plan.

A transitional visit should take place between the ages of 14 and 24 years with a clinician that will take over cancer surveillance, hormone replacement, and management of any late effects. This can be an adult endocrinologist or primary care physician, depending on the needs of the survivor.

Large and long-term studies are needed in almost all areas of childhood thyroid cancer survivorship and transitional care.

Introduction

The importance of long-term survivorship care to reduce survivor and family anxiety and burden, decrease emergency visits and health care costs, improve knowledge, as well as implement timely surveillance is widely accepted.^1,2 Most childhood cancer survivors suffer from an increased number of medical and psychosocial comorbidities as they age and are at a higher risk for early mortality, which differs by cancer diagnosis.³ Primary childhood thyroid cancer survivors fall within this spectrum. Some have significant complications and/or late effects from treatment, whereas others have no long-term medical late effects, but almost all will require life-long thyroid hormone replacement therapy.⁴ Similar, but different issues face pediatric cancer survivors for which thyroid cancer is a second malignancy, but this is beyond the scope of this review. As such, providing survivorship and transitional care, including a survivorship and/or transitional care plan (SCP/TCP), as well as periodically assessing the needs and quality of life (QOL) for the patient and their family, has been shown to increase knowledge and empower survivors and their family.^5,6

Survivorship

In the 1980s the term “cancer survivor” was proposed. The intent of the term was not to label cancer patients, but instead to define a specific community affect by cancer. The National Comprehensive Cancer Network (NCCN) defined that a person with cancer is a “survivor” from the time of diagnosis, throughout treatment, and through the balance of their life. In addition, the NCCN has issued numerous guidelines that have further defined survivors and survivorship and advocated for the use of survivorship plans to support and define continued cancer care as well as to promote healthy living following the completion of active treatment. Survivorship plans are tools that all cancer survivors should have access to, to improve health, wellness, and QOL, irrespective of initial cancer treatment or prognosis.⁷

Pediatric and Adolescent Thyroid Cancer Survivorship

Survivorship efforts across the globe are in various stages of evolution.¹ In the United States, the Children's Oncology Group published the long-term follow-up care guidelines a decade ago, which includes its recommendation that pediatric cancer patients be referred to a cancer survivor program for evaluation at 2 years after the completion of cancer therapy, with regular follow-up visits thereafter.⁸ Adherence to these guidelines are subpar at best, and even less so for pediatric thyroid cancer patients. In adults, implementation of a survivorship care plan (SCP) and a survivorship visit for thyroid cancer has lagged behind that of other cancers because most care is delivered outside cancer centers where survivorship resources are more common. Owing to the rarity of pediatric thyroid cancer and similar issues as for adult thyroid cancer survivors being treated outside the main cancer center, the occurrence of dedicated survivorship visits is even lower, making it an area with substantial room for intervention and improvement in care.⁹

The low mortality associated with pediatric thyroid cancer, even in patients with widely invasive disease, necessitates careful assessment and identification of morbidities that are associated with thyroid cancer that may last for the patient's entire lifespan. Although pediatric thyroid cancer survivors may not be in active treatment for their cancer, many patients will need lifelong thyroid hormone replacement. In addition, all patients require monitoring for disease recurrence or progression, at least for some period of time; those with low-risk disease should eventually be able to have less intense and even eventually no formal monitoring for recurrence. As such, one should consider that patients will be dealing with the physical and psychosocial impact of a childhood or adolescent diagnosis for their entire lifespan as well as the financial costs of lifelong hormone replacement and cancer surveillance.

Although data are limited even in adults, thyroid cancer survivors report greater psychological and real financial hardship than nonthyroid cancer survivors.¹⁰ Assessment and consideration of QOL needs and perceptions should be discussed with patients and parents and addressed within the care continuum throughout life. Pediatric and adolescent thyroid cancer survivors will presumably face similar financial, physical, and psychological long-term effects as adult survivors.

The main goal of a survivorship visit was to identify and address supportive care and practical needs. In addition, the visit should also identify and treat or refer for late effects of cancer treatment, including second malignancies, and monitor for recurrence. As such, high-quality survivorship care should not only consist of prevention, early detection, and management of late effects, but also focus on practical and psychosocial realms.^11,12 An initial survivorship visit should include delivery of SCP and take place within 6–24 months of completion of treatment, which for thyroid cancer is either the final initial surgery or radioiodine therapy¹¹ (Sample SCP—Supplementary Data). This can be at the first follow-up visit or at a separate time. Any member of the care team, which can be an endocrinologist, surgeon, oncologist, or dedicated mid-level provider such as a nurse practitioner, physician assistant, or nurse, can guide the survivorship visit. Both QOL and needs assessment can be completed before or at the visit.

The visit should focus on delivering the SCP via a two-way conversation with the patient and parent, discussing the treatment summary and surveillance protocol, as well as addressing any current or future supportive needs identified by the QOL and needs assessment, which may include psychosocial concerns, finances, fertility, and other practical issues.^1,5 The survivorship visit can also serve as an opportunity to provide age-appropriate education and guidance related to behavioral, health, and societal events, such as education and insurance.¹³ The visit may look different for a young patient that had a hemithyroidectomy for a low-risk tumor and is not placed on hormone therapy compared with a young patient who received extensive neck surgery and radioiodine (RAI) for more aggressive disease, which includes those with stable but noncurable disease, that is, “chronic disease” survivors. However, the basic components of the visit that assess QOL, needs, psychosocial, and practical concerns will be the same for all survivors.

Recently, a group of European countries have developed the PanCareFollowUp care intervention for pediatric cancer patients. This plan includes a presurvivorship visit questionnaire for the survivor and parents including prioritization of follow-up and health concerns. The health care provider completes the treatment summary and develops an SCP, followed by a survivorship visit where the health care provider and the survivor together go over the SCP and discuss any health concerns, and a follow-up phone call to discuss any further results or recommendations and set a plan for future survivorship.¹⁴

In addition, one American childhood cancer center developed a “Survivor Healthcare Passport,” a portable credit card-sized plastic card that led to improved and sustained patient knowledge of their personal late effects.¹⁵ There is little research on survivorship visits specifically for pediatric and adolescent thyroid cancer survivors, although one could posit that based on the chronicity of thyroid hormone replacement, disease monitoring, finances, surgical cosmesis, and known impacts on QOL, pediatric and adolescent thyroid cancer patients would benefit from survivorship plans and visits.

What information should be found in an SCP?

An SCP is an individualized document that contains both a detailed treatment summary as well as specific information about the survivor's long-term risks and care requirements based on current guidelines, which can evolve and adjust as health and personal needs change.¹⁴ The ideal SCP contains a comprehensive follow-up timeline, personalized lifestyle information, and details on how to access additional psychosocial support.¹⁶ When delivered as part of a survivorship care visit, an SCP increases the primary care provider's, survivor's, and family's knowledge of medical and psychosocial late effects. A randomized trial showed that adding a survivorship visit in addition to just an SCP greatly improved the identification and treatment of late effects for pediatric cancer survivors.¹⁷

In addition to addressing practical needs and psychosocial issues, specifically for pediatric and adolescent thyroid cancer survivors, the risk of second malignancies after receipt of radioiodine for differentiated thyroid cancer in younger patients is well known, and may also occur in patients that do not receive RAI.^18

–21 Although they did not look specifically at patients <18 years of age, an epidemiological study with the Utah population database observed that thyroid cancer survivors <40 years of age at diagnosis were at increased risk for multiple circulatory health conditions including hypertension, cardiomyopathy, and nutritional deficiencies.²² The same group also showed an increased risk for gynecological and pregnancy-related complications in young female thyroid cancer survivors.²³ Factors such as race, ethnicity, sex, and insurance status can influence the development of comorbidities in young thyroid cancer patients.²⁴ As such, incorporating formal survivorship into the follow-up of pediatric and adolescent thyroid patients should be an area for future program development.

Of note, adolescents (15–18 years of age) should be viewed and approached differently than younger pediatric patients.

QOL Assessment

The World Health Organization defines QOL as one's perception of their position in life in relation to their goals and value system. Health-related quality of life (HRQOL) refers to the patient's physical, mental, and social well-being and ability to perform ordinary daily tasks.²⁵ QOL and HRQOL are often used interchangeably, and numerous instruments have been developed to measure QOL. Among all childhood cancer survivors, significant differences in QOL scores and perceptions exist between the age of patient at time of diagnosis, length of survival, the type of cancer, and parent's versus patient's perceived QOL (reviewed in McDougall and Tsonis²⁶).

In adults, Thyroid Cancer QOL instrument assessment tools have been developed and validated.^27,28 Large cohort studies utilizing these instruments in both young adult and adult thyroid cancer survivor populations found that although the survival rate for adult thyroid cancer is high, patients experience mental, physical, and financial consequences of their diagnosis and treatment and report worse HRQOL compared with survivors of other adult cancer associated with higher rates of mortality.^28

–32 Of importance, despite the low mortality associated with the disease, adult thyroid cancer survivors report worse HRQOL in the domains of anxiety, depression, fatigue social functioning, and sleep disturbances.^28,30,32,33

Pediatric and adolescent thyroid cancer survivors will presumably face similar financial, physical, and psychological long-term effects as adult survivors, but large studies and data to support this are lacking. Most pediatric survivors of thyroid cancer will undergo life-long thyroid hormone replacement, and acute disease treatment and active therapy will transition to chronic life-long thyroid hormone management and surveillance for disease progression or recurrence. Pediatric survivors should therefore be assessed and considered cancer survivors, as well as patients with chronic disease and receive the psychosocial and financial support associated with this dual reality.

Despite many pediatric cancer survivors reporting similar QOL metrics to the general pediatric population, these metrics are measured while patients are still young and rarely if ever include thyroid cancer survivors within the cohort.^26,34

–37 Studies that report no difference or minor differences in QOL between pediatric thyroid cancer survivors and healthy normative populations are limited with few patients assessed³⁸ or limited cohorts whose situation may not accurately reflect all survivors.³⁹ Few contemporary studies have evaluated the long-term QOL of pediatric cancer survivors, and only track survivors into early adulthood.

Although measured QOL metrics on average may be similar between pediatric thyroid cancer survivors and normative controls, there are still lifelong challenges that pediatric and adolescent thyroid cancer survivors will face and longitudinal data throughout the duration of survivorship is needed. Unfortunately, cancer outcomes are usually measured in a binary manner, survival or death, but these binary outcomes fail to recognize the importance of QOL for the patients. Assessment of QOL through these tools allow patient and provider a dynamic way to assess the potential lifelong implications of surviving the disease early in life, and how this may impact not only physical health outcomes but emotional health outcomes.

Studies of Nies et al, as well as cohort studies from childhood cancer survivor studies indicate that age of diagnosis in childhood is associated with later decreased QOL, and that QOL can change in the years and decades after diagnosis.^26,35,37,39 Unfortunately, data are limited to determine whether pediatric thyroid cancer survivors perceive similar low QOL, or will face similar mental, physical, and financial consequences later in life as adult thyroid cancer survivors. Few studies investigating survivorship and QOL in short- and long-term survivors of childhood cancer include thyroid cancer survivors within their cohorts.

One study from the Netherlands suggests that QOL of childhood thyroid cancer survivors is better than QOL of survivors of adult thyroid cancer,³⁹ but large, multi-institutional, diverse populations of childhood thyroid cancer survivor's QOL are lacking. Together, these findings suggest continued assessment of QOL in survivors of pediatric thyroid cancer, and that identification of patients who are at risk for impaired QOL could help to mitigate subsequent physical, social, and psychological issues that could impact the ability to perform daily tasks. Furthermore, it is important to assess survivor's satisfaction with their QOL.

There are conflicting data on the QOL and stressors that childhood cancer survivors face. Young survivors, still in childhood often report similar QOL metrics as control siblings or when normalized to other children, whereas adolescent and young adult cancer survivors often report lower QOL compared with control siblings or normative data, suggesting that age of diagnosis may play a role in perceived ability to perform daily tasks owing to a cancer diagnosis.^26,34,36 Similarly, young survivors (8–20 years old) of childhood cancer⁴⁰ were less likely to display clinically relevant symptoms of post-traumatic stress disorder (PTSD) compared with young adult survivors (18–40 years) of childhood cancer.⁴¹ Approximately one-fifth of young adult survivors of childhood cancer met the clinical criteria for diagnosis of PTSD.⁴¹ Although only a minority of childhood cancer survivors met the criteria for PTSD, this indicates there is a vulnerable group that maybe at risk for significant psychosocial impact from their childhood diagnosis of cancer.

Survivors may display symptoms of anxiety and avoidance that could impact long-term adherence to thyroid hormone replacement and participation in follow-up care.⁴² Of importance, none of these studies included thyroid cancer survivors, but future studies should include thyroid cancer survivors, and fully assess whether a childhood diagnosis of thyroid cancer impacts QOL and PTSD later in life and whether the severity of these maladies is associated with age of diagnosis, family situation, and disease recurrence or persistence. Studies are needed to assess the prevalence of PTSD in pediatric and adolescent thyroid cancer survivors. Both the psychosocial and physical health needs of pediatric thyroid cancer survivors should be incorporated into follow-up and care.

Transitional Care for the Thyroid Cancer Survivor

Up to 60% of pediatric cancer survivors who transition to adult services experience disease-related complications as an adult.⁴³ Except for the Netherlands and New Zealand, young adult survivors are not uniformly transitioned to adult care.¹ Failure of transition may have important consequences such as lapse in medication or recommended surveillance. Hence, a well-planned transition from adolescent to adult care for pediatric cancer survivors can help mitigate unwelcome consequences.^44,45 A recent policy article from the American College of Physicians, endorsed by most societies, discussed the importance of an individualized transition plan designed in partnership with the patient and family.⁶ Ideally, the transitional visit should take place before patients are off their parents insurance or fall out of pediatric governmental insurance.

There are hospital system-based, community-based, and hybrid models for transitional care that exist. All include a paper or electronic “handoff” where the pediatric team provides a detailed transition plan to the adult clinic which comprises primary care, oncology specialists, or both.⁴⁶ In the endocrinology field, a transitional visit is also encouraged with pediatric diabetics transitioning to adult care; a transition visit makes a difference.⁴⁷ There are five core principles of transitional care: “The healthcare setting should be appropriate for the client's age and stage of development; Common concerns associated with young adulthood should be addressed in addition to specialty care; Transition should promote autonomy, personal responsibility and self-reliance in young adults; Transition programs should be flexible to meet the changing needs of young adults; The designated process should be planned with the young adult and their family.”⁴³ There are some apps and web-based programs to assist as an important resource for adolescents transitioning to adult oncology care, although it is very underutilized, especially for thyroid cancer patients.⁴⁸

Specifically for the young thyroid cancer survivor, a transitional care visit should take place when the pediatric survivor is between the ages of 14 and 24 years, depending on the country's health care system.⁶ The visit should be with an adult endocrinologist or primary care physician that will take over cancer surveillance, hormone replacement, and management of late effects. The pediatric team should prepare a detailed treatment summary and survivorship history along with existent and potential medical and psychosocial late effects.⁴⁶ The survivor and the new care team can then create their own new care management plan going forward and address any current supportive needs. This should also be shared with the primary care physician.

Personalizing Pediatric and Adolescent Thyroid Cancer Survivorship and Care Plans

Large and long-term studies are lacking for pediatric cancer survivors and their families that relate to QOL, survivorship, transition, and supportive needs. Studies are needed to determine the best strategies and tools that would have the most significant impact for childhood thyroid cancer survivors, both for those with primary and secondary thyroid malignancies. Furthermore, the most optimal measures for childhood thyroid cancer QOL still needs to be discerned. Regardless, the data from other pediatric malignancies clearly indicate that coordinated survivorship planning and psychosocial support specific to pediatric cancer survivors improves long-term outcomes for these patients both with regard to physical and emotional health. It is also clear that adult thyroid cancer patients suffer decreased QOL, despite excellence prognosis with regard to mortality, and we must not assume that all factors impacting QOL are centric to just mortality. Survivorship plans and transition plans should be personalized to each patient, and incorporate long-term goals and outcomes for each patient.

These will likely evolve as the child ages, but best to begin early in the transition to a postactive therapy state. Research into the utility and impact of a survivorship visit and care plan as well as the transitional visit specifically for childhood thyroid cancer patients is necessary. Although the prescribed use of survivorship plans is in its infancy in thyroid cancer care, incorporation of this tool has the potential to significantly improve actual and perceived health outcomes for pediatric and adolescent thyroid cancer survivors. Continued research and carefully defining patient-centric goals and outcomes will undoubtedly lead to improved long-term survivorship for pediatric and adolescent thyroid cancer patients.

Footnotes

Authors' Contributions

A.T.F. is a young adult thyroid cancer survivor. M.G. and A.T.F.: (equal): conceptualization, writing, review, and editing.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

No funding was received for this article.

Supplementary Material

Supplementary Data

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